tag:blogger.com,1999:blog-401303964563152307.post3630090695367417386..comments2024-03-17T12:02:12.410-04:00Comments on Love That Max : If my child could wake up without special needsEllen Seidmanhttp://www.blogger.com/profile/01433429847255621203noreply@blogger.comBlogger43125tag:blogger.com,1999:blog-401303964563152307.post-18937917295442662152013-10-02T22:02:35.424-04:002013-10-02T22:02:35.424-04:00I just had to comment coming from someone who has ...I just had to comment coming from someone who has special needs.I was born with a severe case of Sensory Processing Disorder. People often ask me weird question if I would get rid of it. I would get rid of the feeling of being in flight or fight. To say though I would want to get rid of my disorder I wouldn't because I love the person I became and no longer care about the affect that I'm not the norm. Yes I dream of everything a normal person would want. I would love to go a huge concerts but can't because I can't handle a crowd without getting extremally anxious. Anonymoushttps://www.blogger.com/profile/02795113135074814391noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-74616756916302909832013-08-31T18:41:14.702-04:002013-08-31T18:41:14.702-04:00having a child with severe disabilities i would no...having a child with severe disabilities i would not change my son. i love his look what i can do attitude he never says i cant only i will and do my sons special needs makes him who he is a fighter a free spirit who will happily live on his own terms i would not change that however i would love for him to be in a normal non speec ed class go to camp and have lots of friends but those are just minor wishes. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-52707170604046478412013-08-22T21:48:19.794-04:002013-08-22T21:48:19.794-04:00If I woke up typical:
I would not love the flute ...If I woke up typical:<br /><br />I would not love the flute anymore.<br />I would not put as much effort into my schoolwork.<br />I would have no empathy.<br />I would be very ignorant.<br />I would not have any friends.<br /><br />No offense to typical people, but this is what I would be like if I woke up normal.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-45497644319322625842013-08-06T19:54:15.138-04:002013-08-06T19:54:15.138-04:00I have 2 children with disabilities; a daughter wi...I have 2 children with disabilities; a daughter with a chromosomal abnormality called 18q deletion, and a son with autism.<br /><br />If I could wave a magic wand and take away their disabilities, would I?<br /><br />In a heartbeat.<br /><br />Do I adore them with every cell in my body, even with their challenges?<br /><br />Absolutely.<br /><br />I'm confident I'd love the people they become without their challenges just as much as I love the people they are with their challenges.<br /><br />I'm not judging though. To each her own. Just another perspective.Anonymoushttps://www.blogger.com/profile/03798662332939197829noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-14814485077734634712013-08-04T12:37:33.246-04:002013-08-04T12:37:33.246-04:00The only thing I would change about my daughter, ...The only thing I would change about my daughter, who is 16 with CP, she has a trach and is oxygen dependent and vent dependent when she sleeps, is that should could be healthy and not struggle so hard just to breath sometimes, and take away the seizures. The fact is she makes me a better person, mother, wife, sister, daughter, and friend, my other children who are 23,20, and 15 are very different from others their age, more mature, more responsible, now I have a granddaughter who adores Emily and Emily adores her. I know she will never walk or talk, and she will always be basically an infant for life, but I wouldn't change her, because then she wouldn't be my Emily, whose smile melts my heart and who makes me laugh when she laughs, who gives the best eskimo kisses in the world, she is perfect in every way!!!! cindynoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-20555750302342881132013-07-25T01:56:59.420-04:002013-07-25T01:56:59.420-04:00I think most of us love the kid we got, but I too ...I think most of us love the kid we got, but I too might opt to take away my daughter's disability. I LOVE how she mispronounces words, how she scrunches up her face when she is thinking, how her eyes dart around. You are correct, these are all the things that make up my daughter and these things are entertaining. They give me stories to tell--and how I can write a book about how she changed my life. But I see how she struggles with some very basic issues in life. I see how she struggles making friends (she has none her own age--most of her friends are adults are age who know our daughter). I think Lindsey would pick to be typical, to have her tremors completely disappear, to be able to reason, to understand quick conversations. But having known my little girl and watched her grow into a young adult, I'd certainly miss her uniqueness, like when she's angry with me and threatens to take me to "Judge Judy or Judge Joe Brown or Judge Mathis" to settle one of our disagreements. She means it, but it cracks me up. :-)Out One Ear - Linda Atwellhttp://outoneear.comnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-23452121154327963012013-07-24T16:35:05.677-04:002013-07-24T16:35:05.677-04:00If I woke up non-autistic, I would have no friends...If I woke up non-autistic, I would have no friends.Anonymoushttps://www.blogger.com/profile/10616282351291824392noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-49211305619698201562013-07-24T08:41:18.863-04:002013-07-24T08:41:18.863-04:00I read this from my phone the other day so wasn...I read this from my phone the other day so wasn't able to comment but I really appreciate this post and the comments that have followed from it. It's such a hard question to answer and honestly, I'm not sure what I'd choose. I love my son more than anything exactly how he is. But, if I were able to wave a magic wand over his head and help him to speak, get less anxious, and not have to struggle with simple things like learning how to play, I can't say that I wouldn't do so. But I think you raise a good point in one of the comment replies - would he want me to do so? I don't know. <br />I think that like some previous commenters said, that the best we can do is strive for societal acceptance of our children regardless of their abilities. And yeah, I think that the medical world should be focusing instead on alleviating some of the health issues that go along with our kids. My son has horrible horrible allergies. They're scary and uncomfortable and if science could figure that out, I'd be extremely grateful. <br />Thanks again for a thought provoking and amazing post. Kristi Campbellhttp://www.findingninee.comnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-62330016156676490662013-07-24T00:27:43.548-04:002013-07-24T00:27:43.548-04:00I loved reading this. I am pregnant with my second...I loved reading this. I am pregnant with my second child. My first is undiagnosed. I keep thinking of a recent post where you asked a question from a reader about how you decided to have a second child. The truth is that I am not scared that my second child will have the same condition. It frightens me that this baby may not be the same as the one I already know and love. Miss Nancynoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-57913591078368137232013-07-23T10:36:55.909-04:002013-07-23T10:36:55.909-04:00Ellen, thank you for this post.
I started readin...Ellen, thank you for this post. <br /><br />I started reading this blog a couple of months ago, when we were told that my niece is autistic. Like you, I worry about her future, specially about education, because most schools here in Brazil are not well prepared to accept children with special needs. Actually, I believe this is true regarding to all children, because we all have an "special need" in common: to be loved, respected, and recognized as an unique being. I think that the "need" is really in the others, the ones who think they are "normal", the ones who need to learn to see the world in different colors and to feel the joy and happiness of seeing each individual grow in his/her own beautiful way. THEY have an special need: to know our children and learn from them!<br /><br />I always felt, from the start, that my little princess is perfect. I will do anything to give her what she needs to fullfill all her potential, to be whoever she wants to be. But I love her just the way it is and yes, and I really don't see the need for her to be any different, unless being like she is it brings her some pain (so far I believe it has not happened yet). <br /><br />I was talking to my mother the other day and she said that she was looking at other children playing, and that she wished our little girl would behave like that someday... and I had to say: "Well, really... I don't. It just never crossed my mind." I felt a little guilty about that, like I was being selfish, you know? But now, after reading your post and all the other comments... I don't! :-)Daniela Bittencourthttps://www.blogger.com/profile/04065088791757949212noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-83664942582740315122013-07-23T07:34:59.555-04:002013-07-23T07:34:59.555-04:00Anon, this saddens me to read. There is no scienti...Anon, this saddens me to read. There is no scientific cure that will open up people's minds, so the best we can do as parents is keep spreading the good word about how awesome our children are. Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-32872210427234311522013-07-23T07:33:42.745-04:002013-07-23T07:33:42.745-04:00Glad to have you here, Nick. I know many other adu...Glad to have you here, Nick. I know many other adults with CP who feel the same. It gives me hope for Max, and how he will grow into owning his disability.Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-4161115931820461712013-07-23T07:32:26.805-04:002013-07-23T07:32:26.805-04:00Oh, yes, one thing I most definitely wish for is t...Oh, yes, one thing I most definitely wish for is that researchers could focus on reducing the challenges disabilities bring. Sadly, this does not seem to be a focus of funding.Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-25592279700813679602013-07-23T07:31:00.031-04:002013-07-23T07:31:00.031-04:00Bron, I used to compare Max all the time to other ...Bron, I used to compare Max all the time to other kids when he was younger. I think it is a natural thing to do. And I grieved so much in the early years. Both Max's maturity and my own maturity as a special needs parent have brought us both along.Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-71983690766372820382013-07-23T07:21:56.687-04:002013-07-23T07:21:56.687-04:00"But as the years pass I have reached such a ..."But as the years pass I have reached such a place of peace and acceptance for my son's condition that to wish away any part of the child I know and love seems wrong." EXACTLY. And yes, I hope that as more of us speak out about our kids, people will have a better understanding that our children deserve to be treated like any other kids—and that in many ways, they are like other kids. Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-13303595977223705032013-07-23T07:19:44.930-04:002013-07-23T07:19:44.930-04:00Well said. I would love any Max just as much, I am...Well said. I would love any Max just as much, I am sure, but I would ache for the Max I knew.Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-33376945077070995562013-07-23T07:17:10.281-04:002013-07-23T07:17:10.281-04:00Thanks! And yes, there is only one Max in this wor...Thanks! And yes, there is only one Max in this world and yes, I can't imagine him another way. Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-59051478135536092882013-07-23T07:16:18.235-04:002013-07-23T07:16:18.235-04:00I am a do-my-best mom, no better than any other mo...I am a do-my-best mom, no better than any other moms who have kids with special needs or not! But, thank you.Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-22304311401313208182013-07-23T07:15:42.324-04:002013-07-23T07:15:42.324-04:00I've wondered, too; he isn't yet up to pon...I've wondered, too; he isn't yet up to pondering such matters.Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-9212189305125512312013-07-23T07:13:37.067-04:002013-07-23T07:13:37.067-04:00Agreed, this raises all of the troubling questions...Agreed, this raises all of the troubling questions you mention. Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-67680023138068180112013-07-23T07:12:01.184-04:002013-07-23T07:12:01.184-04:00Amen, Nisha!Amen, Nisha!Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-56051281436421612992013-07-23T00:39:41.426-04:002013-07-23T00:39:41.426-04:00My twin sons are autistic. They are absolutely the...My twin sons are autistic. They are absolutely the joy in my life. They see things so clearly, better than I do at times. The thing that saddens me about their lives is the way they are treated by other children and even adults. They cry because they don't have friends, or the mean things others say or do to them. I wish everyone would take a moment and listen to them and enjoy them. I love them the way they are. They are amazing! My heart aches for the way the world views and treats them. I would love to change that!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-20402743482950238952013-07-23T00:31:06.468-04:002013-07-23T00:31:06.468-04:00This is my first time reading your blog and I find...This is my first time reading your blog and I find your point of view refreshing. I'm an adult with Cerebral Palsy, CP is part of who I am, it has touched every part of my life. Without it I just wouldn't be the same person. I would never want to be cured. I think people with cp and other disabilities add a richness to the world, and that the world would be a less place without them. I hope Cerebral Palsy is around for generations to come. Nickhttps://www.blogger.com/profile/01393777612063232968noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-89874913493655590092013-07-22T18:52:48.808-04:002013-07-22T18:52:48.808-04:00Thank you for sharing your personal thoughts and f...Thank you for sharing your personal thoughts and feelings about this study, Ellen. I think there are a couple of issues here. One is the love that you feel for Max (and the love that I feel for Nick and all the mothers here feel for their children). That love is central to everything we believe about civil society, about inclusion and about fairness. But what if disabilities such as Down Syndrome or cerebral palsy could be eradicated? Does it necessarily follow that this means our children wouldn't be as beloved if they were able-bodied? Of course we adore our children the way they are, but their disabilities aren't going anywhere. This study talks about children of the future. Will they (the children of the future) be any less loveable if they do not have disabilities? I don't think all disabilities or genetic anomalies are going away any time soon. But if we can reduce the challenges of future generations in some small way, isn't that a good thing? I am definitely someone who would wish away my Nick's cerebral palsy and I know that would too. But that's a different matter. The Caregivers' Living Roomhttps://www.blogger.com/profile/10920119448415733545noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-53161333374594686212013-07-22T18:37:40.939-04:002013-07-22T18:37:40.939-04:00This whole thing is so hard to wrap my head around...This whole thing is so hard to wrap my head around. My son is 4 and has Down syndrome. I always say that Ds doesn't define who he is but now that there is a chance it could be taken away, I have to ask myself if that is something I'd want to happen. I just don't know. Owen is who he is and I SO love him just that way. If this gene therapy could take away the hard parts like him not having any verbal words, I might just be all for it. This is tough and I don't think there is any right answer. I also know that it will be quite some time before this is available, so I hope that my Owen will be able to make his own decision about this.Anonymoushttps://www.blogger.com/profile/17913754866057778005noreply@blogger.com